European MultiPartner IPF REgistry

Outcomes

Primary outcome:

  • To estimate IPF incidence, prevalence and mortality (biennial and in general) in Central and Eastern Europe

Secondary outcome:

  • To describe basic characteristics (e.g. age, gender, risk factors etc.) of patients with IPF

Tertiary outcome:

  • To describe real life approach to IPF in participating countries from Central and Eastern Europe:
    • diagnostic algorithm
    • treatment patterns and management of patients with idiopathic pulmonary fibrosis
    • treatment outcomes (treatment response, overall survival) and quality of life
    • resource utilization
  • To determine number of patients suitable for enrolment in clinical trials

The EMPIRE (European MultiPartner IPF Registry) project was launched in 2014 on the basis of the Czech IPF registry (initiated in 2012) as a non-interventional international multicentre database of patients with idiopathic pulmonary fibrosis (IPF) in Central and Eastern Europe. Main objective of the registry is the assessment of IPF incidence, prevalence and mortality in Central and Eastern Europe and the determination of basic patients’ characteristics. Information about treatment of patients within the given region is another valuable outcome of the registry.

Registry contribution – Real World Data

The EMPIRE registry monitors the results of diagnostic examinations, treatment information, and ongoing information on the health status of patients suffering from idiopathic pulmonary fibrosis. The registry is aimed to summarize scientific evaluation of the data in a large group of patients with Idiopathic Pulmonary Fibrosis. The purpose of the registry is to collect as many data as possible on the treatment of Idiopathic pulmonary fibrosis and to provide a detailed scientific analysis of this data.

Currently the EMPIRE registry is the biggest database of patients with Idiopathic Pulmonary Fibrosis in Europe. The registry data are highly valuable and can be used for purposes of enrolment into new potential clinical trials aimed on the therapy of idiopathic pulmonary fibrosis. The data may also be of use for health care payers and pharmaceutical companies. Last but not least, so called investigator (doctor)-initiated studies, which create a unique platform for clinical research of this disease, can be performed within the registry.

 

New paper published in Respiratory Research

13. 1. 2020 | More information...

We start the new year the same way as in 2019 – with a paper in the Respiratory Research journal (IF 3.829). The article “The European MultiPartner IPF registry (EMPIRE): validating long-term prognostic factors in idiopathic pulmonary fibrosis“ was written in cooperation of Canadian epidemiologists with EMPIRE investigators and it has been available online since 8 January 2020.


Summary report of the EMPIRE registry

17. 12. 2019 | More information...

Current state of the EMPIRE registry is presented in a summary report, which was created from data export as of 29 October 2019.


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